Dying Well in Missoula
Thursday, November 6th All Things Considered

NPR’s Howard Berkes travels to Western Montana to report on the work underway there to change a town’s attitudes about death, grief, and the care of the dying. Dr. Ira Byock, a hospice physician in Missoula, believes attitudes can change, that the care for those at the end of life can be improved, and that this will, in the end, improve the quality of life in the community. The project has begun by trying to assess the "base level" attitudes in the town by having people come together to tell their stories to one another. Others in the project are working to get people in Missoula to think about how they want to be cared for in their final days and to complete advance directives such as Living Wills and Durable Powers of Attorney. Still others in the project are working to create shrines to the memory of people they have loved who have died.

You can read the transcript:

LINDA WERTHEIMER, HOST: This is ALL THINGS CONSIDERED. I'm Linda Wertheimer.

ROBERT SIEGEL, HOST: And I'm Robert Siegel.

Imagine an entire community focused on death and dying. That's what researchers envision in Missoula, Montana -- a city of 80,000 surrounded by mountains and trout streams. Missoula is in the first year of a 15-year study exploring the quality of life at the end of life.

The Missoula Demonstration Project, as it's known, hopes to transform the city into a place where ordinary people anticipate their own deaths and approach dying as a life-enriching experience.

In our series "The End of Life: Exploring Death in America," NPR's Howard Berkes reports on dying well in western Montana.

HOWARD BERKES, NPR REPORTER: Life is good on a warm spring evening in Missoula, Montana.

SOUND OF LAUGHTER, MUSIC, DANCING

There's dancing in the street as the band "The Mounting Poodles" plays and as "Moose Drool" beer flows from a keg. This block party is a celebration of death, or at least a way of dying. It also marks an extraordinary year, in which the party's host received widespread acclaim for trying to make "dying well" household and deathbed words.

SOUND OF COUNTRY BAND

APPLAUSE

Dr. Ira Byock mingles in the crowd, dispensing handshakes and hugs, urging people to the food. Casual and boyish, Byock seems more like the kid who left New
Ira Byock at the Party
Jersey decades ago than the crusading doctor now spreading the good death gospel. He's a regular in the nation's editorial pages, in news stories, and on interview programs, and he has a recent book called Dying Well: The Prospect for Growth at the End of Life.

IRA BYOCK, MD, EMERGENCY ROOM AND HOSPICE PHYSICIAN, FOUNDER, THE MISSOULA DEMONSTRATION PROJECT, AUTHOR, "DYING WELL: THE PROSPECT FOR GROWTH AT THE END OF LIFE": There's this real confusion in our culture between death and dying. The words are often interchanged. And yet, I submit that mostly death means something beyond life, and that when we look at somebody who we know is dying, we tend to confuse their living experience with death, as if their life was already over.

HOWARD BERKES: Ira Byock is an emergency room and hospice doctor and the founder of the Missoula Demonstration Project. Byock began to think about dying almost 20 years ago, when he brought his father home to die.

DR. IRA BYOCK: He taught me a lot about the personal experience of dying – what it was like to be dying; how hard it was; how embarrassing it was for him to be debilitated and losing weight; looking funny. He worried that even smelled funny.

My father's dying taught me about the gifts that are hidden within this tragedy. His physical dependency and his willingness to be cared for was really a gift to us. Our ability to grieve, our sadness, somehow was given an outlet. We were able to show him love through physical means. We were able to not only ensure that he was physically comfortable, but also that he was really nurtured, loved. The tenderness is, I guess, what I learned.

HOWARD BERKES: Byock has tried ever since to minimize pain, preserve dignity, and encourage tenderness in his dying patients and their families and caregivers. Now, he's trying to institutionalize that in Missoula, hoping to show that an entire community can transform the end of life.

SOUND OF A CROWD AT MEETING

UNKNOWN: That's what I thought.

UNKNOWN: Things go well and settle down...

HOWARD BERKES: Dying has begun to attract extraordinary attention in Missoula. People leave work and home on sunny weekday mornings to talk about dying, in the basement office of the Missoula Demonstration Project.

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: Because dealing with death and dying is really dealing with life and living, and I want to live well.

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: Death can also be full, and the experience of dying can be a meaningful part of our lives. But I think by getting that storytelling out into the community and having ordinary....

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: You know, it's not a disaster, it's a transformation. And we look at that from all kinds of different ways, and it's fascinating.

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: In that death can be a healing experience for the people who are being left and for a soul that's leaving. And I just really believe in the reality, earth-side of things...

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: It makes death something other than just the termination of life. There's the transformative element that starts jumping up all over the place...

UNIDENTIFIED PARTICIPANT IN MISSOULA DEMONSTRATION PROJECT: This is a life process, just as coming into the world is a life process, so is going out.

HOWARD BERKES: More than 2,000 people in Missoula have attended workshops and focus groups, participated in task forces and studies, or simply signed up for mailings. Over the next 15 years, the Missoula Demonstration Project plans to study how people die in Missoula, how they might die better, and how the entire community can support the notion of dying well.

That, in the eyes of project organizers, is as complex as redirecting the work of doctors, nurses, hospitals, and nursing homes, and as simple as getting dying people to tell life stories and getting others to listen.

Kent Elsworth is a project volunteer and director of an aging services agency, who recalls a profound afternoon listening to a dying man and his story.

KENT ELSWORTH, MISSOULA DEMONSTRATION PROJECT VOLUNTEER, DIRECTOR OF AGING SERVICES AGENCY: There were moments in this person's life that led him to absolute despair; where he left home; where he wandered around the United States absolutely homeless; getting a little bit of a job here; working for food over here. And he made his way back home and he started over again.

Listening to that struggle and how he felt inside of himself -- how he actually over a number of years pulled together enough strength to start again -- he was glowing. He was just glowing with light, knowing that he had achieved something in this life.

For him, being able to look throughout his life at all of those struggles and all of those moments, no matter how meager they may seem to someone on the outside, was an achievement of a saint. It was only one day later that he passed away.

HOWARD BERKES: Storytelling is the focus of one project task force. A dozen are planned. Another tries to get people to write living wills and durable powers of attorney, so even if they become unconscious, their intentions are clear. Doctors will know whether they want resuscitation or feeding and breathing tubes to keep them alive.

There's an arts task force headed by Laura Millen, director of Missoula's Arts Museum. She watched her mother die, and found her death expressive and inspiring.

LAURA MILLEN, ARTS TASK FORCE HEAD, MISSOULA DEMONSTRATION PROJECT, DIRECTOR, MISSOULA ARTS MUSEUM: She was funny. She was soul-searching. She was -- she was wise. She was goofy. She was all over the map. And so, I think that if you go with it, you find that it really is so -- such a much richer experience than we tend to think it is.

HOWARD BERKES: These experiences motivate people in Missoula. But there's nothing new in them. Good deaths have been described for years by people like Elisabeth Kübler-Ross, Cicely Saunders, and Joseph Cardinal Bernardin. They've been facilitated for years by the hospice movement. What's new in Missoula is the attempt to institutionalize dying well and the patient care that supports it, because many people still suffer more than they should and die in ways they'd rather not. Project founder Ira Byock:

DR. IRA BYOCK: We know from now a collection of studies that hospital-based care of people in their dying often ignores patients' preferences for refusing futile, life-prolonging care; inadequately treats and in fact inadequately addresses their discomfort; and isolates them from their family. Those things are pretty basic problems that the hospital environment to this point has been unsuccessful at really fixing. The fact is, we now clearly know that the best possible care when you are dying is not being in the hospital.

HOWARD BERKES: The Missoula Demonstration Project promotes hospice care as the alternative model.

SOUND OF KNOCKING AND DOOR OPENING

DR. IRA BYOCK: Hello.

SALLY NAMAN COMPANION TO RUSSELL HAASCH: Hi, Dr. Byock. How are you?

DR. IRA BYOCK: Fine, fine. How are you?

SALLY NAMAN: OK. He's in there taking a bath.

DR. IRA BYOCK: Oh, good.

SALLY NAMAN: He'll be done in just a minute.

BYOCK: OK. Good.

SOUND OF FOOTSTEPS

Hi, Russell.

RUSSELL HAASCH, HOSPICE PATIENT: Hello.

DR. IRA BYOCK: I hear you're getting bathed. Well, good. It's about time you came clean.

LAUGHTER

HOWARD BERKES: Dr. Byock's pun makes Russell Haasch and Sally Naman snicker. The couple left their remote Montana homestead and moved to this small Missoula apartment so that Russell is close to doctors, hospitals, nurses, and hospice volunteers.

DR. IRA BYOCK: Howdy. It's nice to see you. I've been thinking about you.

RUSSELL HAASCH: Have you?

DR. IRA BYOCK: Yeah, I have.

RUSSELL HAASCH: Well, that's good.

DR. IRA BYOCK: I wondered how you were doing.

RUSSELL HAASCH: I've run out of air.

DR. IRA BYOCK: Well, come on out. Let's check you over.

RUSSELL HAASCH: Well, how have you been?

DR. IRA BYOCK: Well, pretty good...

HOWARD BERKES: This is the place Russell's come to die. After 70 years outside beneath Montana's big sky -- cowboying, trail riding, and building log homes. His face is deeply creased; his skin rough and dark. Russell's thin except for a massive barrel chest, which seems to swallow his head and neck. Emphysema causes that. Smoking caused the emphysema, leaving Russell saddled to a walker and tethered to a thin plastic tube bringing him air.

RUSSELL HAASCH: I have learned you get used to pain, but you don't seem to get too used to being out of air.

DR. IRA BYOCK: Does that set you to panicking?

RUSSELL HAASCH: Yeah, oh boy.

DR. IRA BYOCK: Awful, huh?

RUSSELL HAASCH: Oh, terrible, terrible.

SALLY NAMAN: That's what I was gonna ask you, Ira -- I was ask if you didn't think a lot of that was contribute to panicking, because sometimes it's so bad it makes him feel like he's losing control of everything, you know.

DR. IRA BYOCK: Yeah, yeah.

SOUND OF RAGGED BREATHING

HOWARD BERKES: Russell has good reason to panic. He suffers from dyspnea, a symptom of emphysema. It's a breathlessness easily understood with a little experiment. Take a really deep breath and hold it for a while. Russell's breaths are painful. He takes a steroid to make his breathing easier, but long-term use of the drug made his bones brittle. He has tiny fractures in his ribs and spine, so every breath hurts.

OK now, don't exhale. Try taking another breath on top of the one you're already holding. That hunger for air with little lung to draw from is what every breath is like for Russell.

DR. IRA BYOCK: I wish there was more we could do to make your life a little more pleasurable -- a little easier. It seems like your life has never been easy, but it sure as heck is getting harder instead of easier.

RUSSELL HAASCH: Yeah, it's not getting any easier.

DR. IRA BYOCK: Russell is dying hard, but he's trying hard to die well. Ira Byock says Russell has what he needs for that -- drugs for the pain and suffering and doctors to adjust the doses; family, especially Sally, for remembering the past and surviving the present; and bath aides and hospice volunteers for help and friendship.

Russell's life isn't easy as it wanes, but he finds meaning in it just the same.

RUSSELL HAASCH: I was by the stage of what the heck, there's nothing's gonna help. I'm done. That's it. And it was -- and it was hos -- hospice that took them -- they're the ones that grabbed a hold of me and said hey, let's -- maybe we better take and give it another look, just to sort of get you -- get you going down this track, you know, this better track. Think it over there a little bit before you go, so to speak, jumping in the creek there or something, you know.

I'll say it: my family got to know me a lot better. It made better people out of us. I went to my brother and my sister and sister-in-law and said there's no hope; there's no hope on ever -- ever healing me up or to getting me well. Now, do you want to get along and not fight over whose rooster that is over there, or just fight over it for a while? It has changed for the better, or just we've straightened it out for the better, for sure not the worse.

HOWARD BERKES: In the parking lot outside Russell and Sally's apartment, Ira Byock says Russell's life has value to him and those around him, despite his daily struggles.

DR. IRA BYOCK: And you now, he has the wherewithal to end his life if he wanted to. We've talked about this in the past. But he does have guns and he does have medications he could take to end his life abruptly. And he certainly thinks about it. But seems like life is there to be lived, and his attitude is to just take what's being given and try to make as much of it as he can.

I don't envy it, but I respect it.

SOUND OF FOOTSTEPS FADING TO BLACK

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Dateline: Linda Wertheimer, Washington, DC; Robert Siegel, Washington, DC

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